For Dee, who works with a disability nonprofit in New York state, menstruation is a frustrating balancing act, especially after an injury that limited her mobility. Dee, who asked that Rewire not use her last name, must coordinate with her personal care attendant to put on underwear and a pad before transferring to her wheelchair and adjusting them. The perennial struggle with keeping pads in place can come at a high cost to undergarments, clothes, and wheelchair cushions.
“I hate it. If I could make it stop, I would gladly do so. I have told my family and health-care providers that if I ever need to be anesthetized again, I would prefer they perform a hysterectomy while I’m knocked out,” Dee told Rewire.
Meanwhile, Alice Wong, a disability rights activist and organizer who lives in San Francisco, says that “menstruation is a nice reminder that something is ‘working normally’ in my body when there are so many other aspects to my body that are not.” She has limited hand strength and dexterity, paired with elbow contractures that make it impossible for her to use the toilet independently. Her parents, who act as her caregivers, assist her with her bathroom needs as well as use of menstruation supplies. For her, menstruation can present some personal care challenges, and she noted that pads in particular can pose problems because they tend to dislodge while she’s transferring in and out of her chair or moving around during the course of the day.
Wong came up with an innovative solution that would allow her to menstruate in comfort: “As I got older and stopped caring what other people thought, I went with disposable briefs instead of pads. That’s right—disposable briefs that are used for incontinence! There’s better coverage and absorption. And they’re a lot easier to pull on.”
These experiences serve to reinforce the fact that in discussions about menstruation and disability, disabled people themselves need to be centered. It is not a surprise that they have a spectrum of feelings about menstruation, as do nondisabled people. Too often, however, disabled people tend to be among the last of those consulted about policy and best practice recommendations when it comes to their reproductive health and rights—starting as early as their adolescent years.
So when the American Academy of Pediatrics came out with updated guidelines on the subject of menstrual management among disabled teens in June, some disability activists worried that the document could be yet another iteration of policy about disability that didn’t consult disabled people themselves.
The document turned out to be a pleasant surprise, though, and an indication that the AAP is continuing to lead a progressive turnaround on thinking about both adolescent health and disability. When it comes to disability and medical practice, conversations often center the convenience and desires of caregivers, parents, and guardians. Instead, this document focused on issues of relevance to the disability community, particularly with regard to the abuse of menstrual suppression, which doctors sometimes recommend to disabled patients and their caregivers.
Advocates for menstrual suppression in disabled people, by both hormonal and surgical means, argue that it’s necessary in cases of “severe” disability where people might experience hardship with their periods. This can include the challenges of managing menstruation when people have limited mobility and rely on caregivers for assistance with activities of daily living, including toileting. They also assert that menstruation can be “traumatic” for people with intellectual, cognitive, or developmental disabilities. Furthermore, they claim, people who menstruate can get pregnant—often seen by nondisabled people as undesirable, though it can disturbingly be the first and only sign of sexual abuse.
These arguments primarily focus on the convenience and preference of caregivers who don’t want to deal with menstruation, and they strip disabled people of autonomy. Many people have very complex, intimate, and personal relationships with their period. Letting disabled people speak in their own words about their experiences with menstruation should be central to any conversation about menstrual suppression, especially extreme measures like the so-called Ashley Treatment, in which the uterus and breast buds are removed and children are medicated to attenuate their growth, ensuring that they remain small and light. Though it is overwhelmingly rare, parents say the treatment makes their children easier to handle, reducing the risk that they have to surrender their children to care facilities.
The AAP guidelines, hearteningly, center the patient from the very first line, stressing that they must be involved in discussions about such a sensitive issue. The organization states clearly that menstrual suppression shouldn’t be done for the wrong reasons: “When the stated reasons for suppression are an inability of caregivers to deal with menses or fear of abuse or pregnancy, further investigation into the patient’s circumstances and safety is warranted. If the issue is mainly to get assistance at school, then health care providers can help families to address the student’s needs with the school.”
The document stresses that physicians should fully evaluate the medical and social needs of their disabled patients—including interest in sexual activity—before making a menstrual management recommendation that suits their circumstances. The authors discuss a variety of hormonal and nonhormonal birth control options and some of their implications for disabled people, but do not make specific recommendations.
This focus on choice, again, reflects disabled people’s wide variety of experience with menstruation. Wong, for example, said while she has “options to suppress menstruation whether via an IUD or oral contraceptives” and “considered it in an effort to simplify my life and personal care needs,” she ultimately decided against it.
For her, the challenges are worth it: Taking control of her period by using pads and disposable briefs is an assertion of her independence.
Sam de Leve, an athlete from Southern California who also spoke to Rewire about their relationship with menstruation, experiences relatively light periods thanks to an IUD and finds that this provides some conveniences—but they aren’t using the IUD for menstrual suppression and aren’t sure they’d actively seek it out for that purpose.
When it comes to the loaded politics of the Ashley Treatment, de Leve commented, “It seems a little convenient that they target the most gendered parts of the body (breasts, uterus) when deciding what to remove. They’d make transfers easier if they removed arms or legs, but Lord knows they don’t do that! So I don’t believe that these are solely practical considerations or even primarily motivated by practical considerations. I think some of these families have this innocent ‘pillow angel’ mental image of their child, and this aspect of these procedures is about maintaining that image, not just the functional argument many of these care providers make to justify the Ashley Treatment. This is consistent with the desexualization of people with intellectual disabilities, or thought to have intellectual disabilities.”
Their comments echo concerns of those in the larger disability community who worry that practices like menstrual suppression serve to desexualize disabled people, but don’t actually offer concrete benefits. This is something the AAP itself also discusses, commenting that disabled youth are sexually active, but also experience higher rates of sexual abuse, adding, “It is important to discuss that any menstrual suppression does not change the risk of abuse or sexually transmitted infections.”
In their discussion of the Ashley Treatment, which was sharply condemned by a working group after its development, the authors also include stern warnings about the history of coerced sterilization in disabled people, and they caution that such procedures have “clear ethical and legal implications.”
Disabled youth are often given inadequate sexual health education, including education about menstruation, and they’re ill-prepared for the onset of menarche. Guardians, parents, and caregivers are sometimes under the impression that they’re doing their charges a favor by suppressing menstruation without consulting them, but they’re not turning to adults who menstruate to ask them about their own experiences. If they did, they might find that disabled individuals would like to be able to make that choice for themselves. In a culture where disabled people are both figuratively and literally desexualized, hiding menstruation doesn’t resolve issues like the abuse and dehumanization of disabled people—it just sweeps these problems under the carpet.
These guidelines may serve as a wakeup call to pediatricians that it’s wise to discuss concerns about menstruation before its onset with patients and their parents. A conversation about what to expect and the options available can encourage people to think about their needs and wants ahead of time. Disabled youth tend to be very isolated from the rest of the disability community, and encouraging parents to connect their children with adult disabled mentors who can help them navigate menstruation and other matters can be rewarding for all parties, including parents who may feel at sea when it comes to caring for their children.
In recent years, the AAP has distinguished itself with common-sense, but still radical, policy proposals, like its recent recommendation to use long-acting reversible contraceptives to prevent teen pregnancy, and explicit discussion of disabled patients using contraceptives, reminding pediatricians and the public that disabled youth have sex. The organization is presenting factual, evidence-based information to its members when it comes to youth sexual health, and raising the prospect that teens will be empowered to take charge of their own fertility and choices, regardless of disability status and sexual history.